Hi:
Sorry you were diagnosed with an acoustic neuroma or, as my neurosurgeon always refers to it, a vestibular schwannoma. Here, we just call it an 'AN' for short. However, I'm glad you found this website and these forums. As previously mentioned, there is a wealth of information available on the web regarding this tumor. When I was diagnosed (May, 2006) I went to my computer, pulled up Google© and typed in 'acoustic neuroma'. I was shocked to note that there were over 480,000 sites that had 'acoustic neuroma' as part of their content. I believe this site - the 'official' ANA site, is among if not the best, in terms of concise, accurate information. The message boards are invaluable. This is where folks newly diagnosed and 'posties' - people like myself and others who had an acoustic neuroma and underwent surgery and/or radiation to remove and/or destroy the tumor - can ask or try to answer questions. We collectively try to provide the best answers we can. Of course we're not doctors and cannot offer specific medical advice, but beyond that inevitable restriction, we can usually be helpful because we've 'been there' and can relate and empathize to and with other AN patients.
I can tell you from reading the posts on this board for the past 10 months that many doctors are not familiar with acoustic neuroma tumors. Unfortunately, AN's are often misdiagnosed or simply ignored while doctors play guessing games and diagnose the AN symptoms as anything from 'a sinus problem' to 'whatever'. Only an MRI (magnetic resonance imaging) scan can clearly (and unequivocally) show the tumor, which is relatively small but very troublesome because of it's location. If your AN is actually 3 cm - you need to have that exact information - it qualifies as mid-range and you may be a candidate for radiation treatment. Only a qualified physician can determine that.
The one thing I wish to emphasize is that, for your own peace of mind as well as to give you better odds of a successful outcome to this medical challenge, you must have a surgeon and/or radiologist who is very experienced in AN surgery and/or radiation. Unlike cancer, heart or back problems, an acoustic neuroma is a relatively rare condition. That means that many neurosurgeons are not familiar with it and while they may be well-qualified surgeons, they are probably not a good choice if you require microsurgery. You want to ask any surgeon how many of these operations has he performed and what is his success rate. 'Success' being defined as not only removing the tumor but that the patient did not suffer facial paralysis or other complications, afterward. Your knowledge based on research is your strength in this situation.
Radiation is a bit different. There, you want a radiologist experienced in treating AN's as well as a facility with the latest and best equipment. Again, experience (physician, facility, staff) are crucial. Don't go with the first doctor or opinion you receive. It's tedious but you'll need to schedule at least a few physician consultations and ask many questions. Do not be intimidated by any doctor. This is your life, your health, your decision.
While I often describe treating an acoustic neuroma tumor as a 'minefield', usually, the less the severity of your symptoms 'going in', the better the chances of a good outcome. Usually. Of course, being in good physical condition is a major factor, too, whether you choose microsurgery or radiation. I had a large (4.5 cm) AN and underwent both microsurgery (to 'de-bulk' the tumor...hollow it out) and then, FSR (Fractionated Stereotactic Radiosurgery) to kill the remaining tumor DNA. It wasn't a lot of fun but I'm now just about where I was before my AN made itself known to me via dizziness, imbalance, lethargy, loss of taste and single-sided deafness. I experienced no surgical complications: no facial paralysis, double vision, swallowing problems or CSF (cerebrospinal fluid) leaks. My balance is just about normal and my ability to taste has returned. As my doctor prudently warned me, pre-op, the single-sided deafness remains. However, my 'good' ear has excellent hearing and I find that while the one-sided deafness is a mild handicap, I can deal with it. You will, too, I'm certain. Following my AN surgery, I was home in 4 days. I was driving again within two weeks. I was treated as an outpatient when I underwent the radiation treatments a few months later. They took about 30 minutes a day, five days a week for 5 weeks. Tedious but painless. I'm retired but probably could have returned to my old (desk) job within 3 weeks or less.
When you do your AN research, you'll read of the many things that can go wrong during and after surgery and/or radiation treatments. While complications can and do occur and no doctor can guarantee the outcome of any procedure, if your surgeon/radiologist is experienced with treating AN tumors and you're in good health with a good attitude going in, the odds are that you'll get through this just fine. During your physician consultations and especially if you need to be hospitalized, you'll want an advocate. A spouse, family member or friend who will stay with you and make sure you're being treated well and have whatever you need. It's a tough job and a 'labor of love'. Other posters will offer even more advice, I'm sure.
Your anger, although quite understandable, is really a waste of your energy at this point. Venting is healthy and you're quite free to do that here, but ultimately you have to go forward, not backward. You don't really have the luxury of wasting time being angry over what you cannot change, now. Focus on researching acoustic neuroma tumors, learn all of your options, talk to as many doctors as you deem necessary and finally, come to a decision on addressing your AN that you're comfortable with. Many AN patients come through this experience quite well. I was 63 and had both microsurgery and radiation. I did very well and I hope and will pray that you will, too. We're here to support and advise as best we can. We all wish you the best. Come back often.
Jim
